Sometimes I wonder...why not just have surgery and be done with it? Even if not in life or death.

I don't have severe issues right now, but sometimes I wonder...why not just have surgery and be done with drugs and wondering if I'm going to have to run to the toilet in the middle of a phone call/swimming/playing with kids, etc.

It seems that surgery is only a 'last resort'...but many people who have it are so glad they did and can't believe they didn't do it sooner. I have many other things I'd like to spend my UC drug money on each month...and I'm only on a couple 5ASAs and Cortifoam (plus probiotics).

I do understand it's a major surgery and is a pretty long recovery...but...what's a couple months or even a year compared to constantly pumping drugs into our bodies and wondering when the next flare will come? Or if in a flare...the next ill timed BM?

I don't know...just a bit of a ramble...and I'm not trying to start a hot topic debate...I'm just seriously wondering...am I overlooking something? I'm afraid I sound incredibly naïve...but it's just crossed my mind lately.

Anyone have any thoughts here?

Someone started a similar thread not too long ago. I think everyone has to make their own choices. I'm all for yanking the colon out and being done with this disease but I'm also for avoiding surgery for as long as possible if you aren't doing too bad. I think it all boils down to risk vs reward. If you're not doing too bad then maybe the surgery risk really isn't worth it but if you're getting tired of fighting the good fight and too mentally stressed over the whole thing then maybe the reward of surgery is worth the risk. Everyone has to make their own choice.

I've thought about the same thing and while it is tempting to no longer need meds and not have UC worries, the uncertainties of how your particular body will heal from surgery still scare me. I hate the idea of getting up every night to go and I don't like the idea of possibly having damage to the nerves down there. I am a worrywart so surgery would be a tough sell if i wasn't unable to leave the house.

I often wonder about this too. Yes, with an ostomy or j pouch you'd have frequency-every day. But it's consistency. One poster mentioned you'd never have a "normal" day, and no, you wouldn't. However, you'd never have an awful day either. My "normal" days now are never on my schedule. I don't wake up in the morning and say, guts, be normal today I've got this this and this to do. No, I have to try to live a life never knowing if I'm going to crap 11 times today...or not at all...will I have urgency today? Is it ok to go to the park where washrooms are scarce to nil? Maybe it is maybe its not. I'm not much of a gambler. I've already decided that given the need for surgery I'm opting for permanent ostomy. J pouch is still too unpredictable for my liking. I don't want to worry about anal leakage or pouch itis. Yes, I know, my bag can-and likely will- leak. For some reason I can better deal with my "appliance" leaking poo then my butt hole leaking poo. I assume that my need for predictability has lots to do with my anxiety over all this, so yeah, many non or less anxious people will see me idea as mad. The anxiety is always with me, never knowing when the next crap storm will hit. Wait for new miracle drug? Try the sixth med choice?? No thanks. Even if a med works today for me... I will always be anxious worrying if it will still work for me tomorrow. I wish gastro docs and surgeons would be more willing to go to surgery earlier for those who really want to avoid the years of med roulette. I'm sure those who want to avoid surgery at all cost wish the drs would stop pushing surgery and allow them to limp their colons along until the next med can be tried. I get it. We are all different. Yes, we all have ibd...but the differences in what other things we are dealing with makes treatment opinions very different.

It's always the what if.

UC is the devil I know. Surgery is the devil I don't know. Unless I absolutely need to go down that road, I don't want it just yet. I'll look into it, way my pros and cons, but I'm not ready yet. I think a lot of us think like that.

DBwithUC said...
If it was not medically necessary, I imagine there would be no insurance coverage

Medically necessary is subjective. Most of the people who get surgery aren't in mortal danger from not having the surgery -- it's all shades of grey. You'd merely need to have a surgeon who agreed that surgery would significantly improve your quality of life.

That said, I see the reasons as two-fold:
1) Some people go into complete symptomatic remission on relatively benign medication. I'm talking about a REAL, durable remission, where you poop about once a day and eat what you please and don't have urgency or pain. We don't seem to see a lot of these cases on the boards, but that's because those people don't waste their time on UC message boards. As noted upthread, a colon that works 100% perfectly, which IS achievable through medication for some patients, is always going to be better than a well functioning j-pouch or ileostomy. I love my j-pouch and I have no regrets, but if I could magically have a perfectly functioning colon instead, I would prefer that.

2) Every surgical procedure has associated risks. The risks vary depending on who you are, where you are in life, your comorbidities, etc. For example, an obese smoker has "more to lose" by going straight to surgery because any surgery is going to be more dangerous for them than a non-smoker with a normal weight. Another example is women of childbearing age. Even if I knew in advance that my j-pouch was going to function great and I wouldn't have complications from surgery and it would put an end to my UC problems forever, I would be hesitant to go straight to surgery because any abdominal/pelvic surgery increases the risk of infertility.

This is all very interesting. ..

I had a fantastic 3.5 year remission with Asacol and enemas. ...near perfect function. And I do realize a pouch or an ostomy is never going to be that. I've just been struggling lately trying to get this under control. I'm nowhere near wanting surgery. ...but I don't think it would take me as long as some. My main concern would be I'd do it and bam...miracle drug!!

I like reading the responses...anyone else feel free to chime in!

I never thought when I got sick that I would be having surgery. Hell I despised the idea and turely thought meds would help me.

They havent and now im getting my colon removed.
My "medically necessary" covers everything on the list in the surgery literature... but they also focus on Quality Of Life... and thats what it all comes down to.

If meds had given me SOME of my life back maybe I would feel different.
if prednisone worked to bridge me over to the next new med, id be more inclined to keep "limping my colon along" (loved that, poopin) but I don't have that option.

My opinion is to try everything you can as long as you have a decent quality of life that YOU at happy with.
Once life with UC is too much... why not get rid of the UC!
Try the meds... try to live life... and if UC wont let you... then GOODBYE UC! :)

As for ostomy vs pouch. I am having surgery Monday and have made it clear that I may not be interested in moving on past my ileostomy. I am having a 3 step surgery so I get atleast 4 months of an end-ileostomy to decide. Or longer. You can have an end-ileostomy for years before deciding to try a pouch.
and even if you do decide and have issues... though complicated... it can be reversed back to an ostomy.

But thats a whole other topic.

I am having surgery but will always post encouragement to UCers on tis board to try the meds until they are no longer able to... medically or psycologically.

But you are now maintaining remission with mild 5-ASAs. IMO stay on them.

It might be a different story if you were pred dependent to stay in "remission", or if side effects of big gun immunosuppressants were causing you problems, and then I would seriously think about surgery unless I could get off of them.

Thanks for all the discussion everyone. And I am not anywhere near surgery...especially not having just been on the 5ASAs...I didn't mean to lead anyone to think that. I was just starting a convo. I do not think it would take me as long as some to pull the trigger...but I will certainly try the other drugs first. I've not been around as much/as long as some so I've never heard of anyone being dx and opting for surgery straight away. I was just curious. I'm not sick enough to appreciate surgery I don't think.

Something else I thought about was age. But really...I'm just trying to have a convo....and I've found the responses interesting.

It never hurts for anyone to ask questions about it or even meet with a surgeon. At least then if it comes to an emergency situation you have a relationship with a surgeon and an idea of what will happen.

I'm with ya OP and if Entyvio doesn't work for me, I'm opting to have surgery. No sense in living life like this and running through the continual pain and stress. I'm giving it another 6-12 months but I'm so pessimistic that at the end of the day, I see myself parting ways with my colon in the not too distant future.